February 2022

Caregiver Spotlight: Winnie Baez

Full-time Caregiver, Winnie Baez shares her story, and her tips for self care while continuing to care for a loved one fighting a life threatening illness.

When considering the qualities that make someone an exceptional caregiver, Philadelphia resident and mother of five, Winnie Baez, fits that very description. As a full-time caregiver to her 8-year-old daughter, Amayah, who has several life-threatening diagnoses, Winnie’s life is dedicated to caring for her family. Winnie and her husband, who is currently battling cancer, take shifts throughout the day and night to provide life-sustaining care to Amayah. Although caregiving is challenging, Winnie’s resilience, faith, and optimistic attitude help carry her and her family through the tough times, despite what life throws at them. 

In our recent interview, Winnie provides her perspective as a life-long caregiver and explains how she and her family stay strong during challenging moments. She also details her A Week Away Foundation Respite experience and how it enabled her family to bond and de-stress.

How do you stay optimistic during more challenging/difficult moments?

I am very faithful, and religion plays a big part in my life. I have turned to my faith to stay strong, and it helps me realize that not everything is bad. For example, I have a rosary from my mother-in-law that I pray to during challenging times. I also like to display messages and quotes around my house. For example, each morning, I have morning affirmations for my kids that remind them that today will be a good day. These affirmations help my family stay positive. Even right here in their study area, I have a funny quote that reads, “This is us, a little bit of crazy, a little bit of loud, and a whole lot of love.” 

My daughters are 7, 8, 9, 10, and 13. They have seen me cry many times, but they also see me get back up and keep going. They see my ability to stay strong. I feel like my children need to understand that it is okay to be sad and overwhelmed from time to time. Every day, every week, there are ups and downs. Some days I am in a “mom” state of mind, slightly annoyed, and telling everyone to stop whining. But, on other days, I feel incredibly blessed and energetic. My girls are so bright and can pick up on it. They are growing into strong women themselves.

How do you practice self-care, or are there ways you like to spend time relaxing after a long day?

I love collecting retro items from my childhood. Anything ’80s and ’90s: Full House, Hot Wheels, Back to the Future! We love movies from that time, and I even call my girls “The Breakfast Club” because we have so many different characters in our bunch. 

As a special effects artist, practicing all kinds of special effects makeup helps me manage my stress. I try to do it as much as possible because it helps me focus on something positive and creative. We have a party about once a month, and I practice special effects makeup on my kids. Recently we had a Roaring Twenties party. It is special for us to have a little time to let out steam and have fun even if we are not going anywhere. The COVID-19 pandemic makes it dangerous for us to be out in public, and we have to be creative and create fun at home.

What kind of advice would you give to another caregiver/family dealing with a loved one battling a life-threatening illness?

Staying organized is key! Keep every document. I have over 50 folders of records that I keep for my family, and I can find and reference them whenever I need to. 

Of course, it is easier said than done, but keeping strong is critical. I often lean into my faith and family for reassurance and peace. We live by the motto, “Don’t leave your comrades behind!” Having a support system is essential when you are a caregiver, so you have someone to lean on when you are feeling down.    

Our family also makes a point to cherish the little things in life. For example, sometimes we can bake together and enjoy some sweet treats, which feel like a luxury for us, even if it may seem normal to others.

What are some ways you like to enjoy spending quality time with your loved ones?

Our family spends a ton of time together, and when we can, we enjoy watching TV together. Caregiving is a 24/7 job for my husband and me, so we try to have our children help out and understand how they can contribute. In addition, we like to incorporate things into our home that make our daily routine run smoother, like whiteboards that keep track of medical needs and cork boards that help oversee individual responsibilities.

How did you come to know about A Week Away?

While Amayah was a patient at Children’s Hospital of Philadelphia (CHOP), a family’s child in a nearby room passed away. I felt so bad for the family and had difficulty processing it. I was devastated and overwhelmed, so I turned to my faith for reassurance. I was out in the hall praying with my rosary and crying, and our social worker Joan saw me. She sat down with me, talked me through what I was feeling, and she recommended that I fill out an application for A Week Away. At first, I was not interested in filling out another form. But when I got home, I looked into A Week Away Foundation, applied for a Respite, and was gifted an unforgettable experience for my family. 

Could you tell us about the Respite you received? 

Our entire family was able to go on a beautiful vacation in Ocean City. The ocean is one of my favorite places to be, but I haven’t had the opportunity to go in a long time. When we got there, I walked down to the beach by myself. Standing in front of the ocean, I let all of my stress go away with the waves. It immediately felt like a weight was lifted from my shoulders. We had full-time help with us and could finally enjoy quality time together. My children help us out so much. They are so incredibly knowledgeable and can change a trach better than some nurses we have encountered. Although this is extremely helpful at home, the Respite allowed them to enjoy just being kids instead of worrying about helping mom and dad with caregiving. It was wonderful to see them play out in the sand with other children their age and be worry-free kids. Watching Amayah touch the sand for the first time was a particularly emotional moment.  

The vacation was not only important for my family but also for my marriage. As caregivers, my husband and I don’t prioritize time together, and we have missed a lot of relationship and marriage milestones. However, during our Respite, we celebrated our belated anniversary and reconnected as a couple. We spent quality time together looking at the beach instead of medical tubes and smelling the ocean, not medical equipment and rubbing alcohol. Our Respite was such a blessing to all of us, and I am so grateful for it. 

Winnie’s impressive well of positivity helps her stay strong and fight for her family day in and day out. If you have a friend or loved one caring for someone battling a life-threatening illness, they too may be eligible for A Week Away. We aspire to provide families with quality time away spent with their nearest and dearest without worrying about constant caregiving. Caregivers are the pillar of strength for their families, but time away from those responsibilities can be rejuvenating not only in terms of rest but as a moment of hope to keep them going amid a myriad of struggles.